An independent evaluation published today by the House of Commons Health and Social Care Committee’s Expert Panel has revealed that inconsistent commissioning across integrated care boards (ICBs) is driving a postcode lottery in palliative and end of life care for babies, children and young people in England. The report highlights ICBs lack the capacity, data, or mechanisms to understand properly the end-of-life needs of their populations, meaning too often they fail to commission services that accurately reflect local demand.
The report follows the government’s announcement that a new modern service framework for all-age palliative and end of life care is being developed in time for Spring 2026. Ministers have said the framework will align with the ambitions of the 10-Year Health Plan and address key challenges facing the sector. Specifically, it will set a clear long-term outcome goal, identify evidence-based interventions, support consistent uptake of interventions locally and drive innovation.
Reacting to the expert panel’s report, Nick Carroll, Chief Executive Officer at Together for Short Lives said:
“I am very grateful to the expert panel for shining a light so specifically and clearly on the barriers seriously ill babies, children and young people face in accessing the palliative care they need. These are exacerbated for children and families living in socio-economically deprived areas and from minority ethnic backgrounds, and the report shows that too little has been done to address these.
“The expert panel has reinforced what we hear every day: the inconsistent and uncoordinated approach to commissioning is a key driver. Too many integrated care boards do not have the data, capacity or understanding of local need to plan services effectively, creating a postcode lottery which leaves too many families feeling abandoned and overwhelmed as they face unacceptable inequities in care.”
As the UK Government develops a new modern service framework (MSF) for palliative and end of life care, we have a vital opportunity to address these systemic challenges. It is encouraging to see the government recognise the need for accountability.
To ensure the framework delivers real change, the MSF must also drive more consistent, informed and equitable strategic commissioning across all ICBs. The government should examine whether children’s palliative care would be more effectively planned and funded at a national or regional level to create economies of scale.
Nick Carroll said: “Without a coherent approach to addressing workforce shortages, funding gaps and commissioning challenges, seriously ill children and their families will continue to face barriers to accessing the care they need, where they need it. We look forward to working with ministers and officials over the next few months to develop their vital new palliative care framework.”
“I am very grateful to the expert panel for shining a light so specifically and clearly on the barriers seriously ill babies, children and young people face in accessing the palliative care they need. These are exacerbated for children and families living in socio-economically deprived areas and from minority ethnic backgrounds, and the report shows that too little has been done to address these.
Nick Carroll, Chief Executive Officer at Together for Short Lives